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        <title>Australian National Duchenne Muscular Dystrophy Registry</title>

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            <h1>Australian National Duchenne Muscular Dystrophy Registry</h1>
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            <div id="introduction">
                <div id="background">
                    <h2>Background</h2>

                    <p>
                        Recent scientific and medical advances have led to substantial
                        changes in the treatment of many neuromuscular diseases (NMD).
                        New therapeutic strategies are being developed and, for some of
                        these treatments, plans for large studies involving patients
                        from more than one country are already in place.
                    </p>
                    <p>
                        The Australian National Duchenne Muscular Dystrophy (DMD) Registry
                        has been developed to collate a patient's DMD gene sequence and
                        clinical information about their disease. The Registry provides an
                        important enabling tool for clinicians and clinical trial sponsors
                        to quickly identify patients suitable for each study, particularly
                        those therapeutic strategies that target specific genetic defects.
                        Potentially eligible patients will be informed about new trials and
                        studies through the Registry's clinical network.
                    </p>
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                <div id="purpose">
                    <h2>Purpose</h2>

                    <p>
                        To provide Australian Duchenne Muscular Dystrophy families with an
                        opportunity to improve the outcomes of individuals affected by DMD.
                    </p>
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                <div id="objectives">
                    <h2>Objectives</h2>

                    <p>
                        To improve care of DMD patients through the coordination of
                        diagnosis and therapy and by ensuring new intervention strategies
                        are available on an equitable and consistent manner across Australia; and
                    </p>
                    <p>
                        To improve opportunities for international collaboration by
                        facilitating and accelerating recruitment process of Australian DMD
                        patients into new clinical trials and for participating in studies
                        for the benefit of the world DMD community and the advancement of medical science.
                    </p>

                    <p>
                        The Australian National DMD Registry adheres to the <a
                        href="http://www.nhmrc.gov.au/publications/ethics/2007_humans/contents.htm">National
                        Health and Medical Research Council's National
                        Statement</a>, forms part of an international effort
                        led by
                        <a href="http://www.treat-nmd.eu/home.php">TREAT-NMD</a>,
                        which brings together patients and specialists working
                        on treatments for neuromuscular (NMD) disorders, and
                        has received approval reference #2010/23 from the
                        <a href="http://www.health.wa.gov.au/healthdata/HREC/index.cfm">Department
                        of Health WA Human Research Ethics Committee</a>.
                    </p>
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                <div id="contact">
                    <h2>Contact</h2>

                    <p>
                        For more information on the Australian National
                        Duchenne Muscular Dystrophy Registry, please <a
                        href="http://www.genomics.health.wa.gov.au/contact/index.cfm">contact
                        the Office of Population Health Genomics</a>.
                    </p>

                    <p>
                        The consent form for patients wishing to participate in
                        the registry can be
                        <a href="${webhelpers.url('/static/Australian_National_DMD_Registry_consent_form_100930.pdf')}">downloaded here</a>.
                    </p>
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            <div id="stakeholders">
                <h2>Stakeholders</h2>

                <h3>Muscular Dystrophy Associations</h3>

                <ul>
                    <li><a href="http://www.duchennefoundation.org.au/">Duchenne Foundation</a></li>
                    <li><a href="http://mdaustralia.org.au/">Muscular Dystrophy Foundation Australia</a></li>
                    <li><a href="http://mda.org.au/">Muscular Dystrophy Australia</a></li>
                    <li><a href="http://mdnsw.org.au/">Muscular Dystrophy New South Wales</a></li>
                    <li><a href="http://mdqld.org.au/">Muscular Dystrophy Queensland</a></li>
                    <li><a href="http://mdasa.org.au/">Muscular Dystrophy South Australia</a></li>
                    <li><a href="http://mdtasmania.org.au/">Muscular Dystrophy Tasmania</a></li>
                    <li><a href="http://www.mdawa.asn.au/">Muscular Dystrophy Western Australia</a></li>
                </ul>

                <h3>Government Bodies</h3>

                <ul>
                    <li><a href="http://www.chw.edu.au/">The Children's Hospital at Westmead</a></li>
                    <li><a href="http://www.sch.edu.au/">Sydney Children's Hospital</a></li>
                    <li><a href="http://www.health.nt.gov.au/">Department of Health and Families (NT)</a></li>
                    <li><a href="http://www.health.qld.gov.au/">Queensland Health</a></li>
                    <li><a href="http://www.health.sa.gov.au/">Department of Health (SA)</a></li>
                    <li><a href="http://www.dhhs.tas.gov.au/">Department of Health and Human Services (Tasmania)</a></li>
                    <li><a href="http://www.health.vic.gov.au/">Department of Health (Victoria)</a></li>
                    <li><a href="http://www.health.wa.gov.au/">Department of Health (WA)</a></li>
                </ul>
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                Authorised by Hugh Dawkins for the
                <a href="http://www.genomics.health.wa.gov.au/">Office of Population Health Genomics</a>.
                <br>
                All content &copy; 2010 <a href="http://www.genomics.health.wa.gov.au/">Office of Population Health Genomics</a> on behalf of the Australian National Duchenne Muscular Dystrophy Registry.
                <br>
                Supported by <a href="http://www.ivec.org/">iVEC</a> and the <a href="http://www.genomics.health.wa.gov.au/">Office of Population Health Genomics</a>.
                <br>
                Developed and hosted by the <a href="http://ccg.murdoch.edu.au/">Centre for Comparative Genomics</a>, <a href="http://www.murdoch.edu.au/">Murdoch University</a>.
                <br>
                <a href="${webhelpers.url('/admin/')}">Administration</a>
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